Update on beginning home dialysis

[WillaCather]

Hi everyone,

I just wanted to update everyone on what eventually happened with the home dialysis. I thank you all for your advice. I began the peritoneal dialysis last week. The nurse was very thorough, patient, and answered all my questions. By the end of a couple of days, I was able to do a manual treatment at home. I will begin training on the cycler this week.

Peritoneal dialysis makes a lot of sense. It's not difficult to do. The main worry is of keeping everything as hygienic as possible as to avoid infection. Otherwise, it is quite intuitive. The solution goes in, sits, and comes back out. I actually felt good about being so hands-on in my own treatment.

On to the cycler!

[MToQ]

You go girl! You got this!

[Seanthesheep]

Well done. Great choice. I had two years on peritoneal dialysis and it was fine. Then a year on Heamo and it was not so good. Now 30 months post transplant and doing great. Good luck for the future !

[RonZone in reply to Seanthesheep]

Just curious, why did you switch from PD to Hemo?

[Eyak1971]

Great. Just a word from experience. Sometimes when you are on the Cycler you get in a very automatic mode in connect and disconnect, added to that you do it when you are a little tired, and mistakes may happen like getting air in the system. Once you do it you will never forget again. Be patient and take your time.

[RonZone in reply to Eyak1971]

Just curious, what does getting air in the system do exactly. How does it make you feel? How do you get rid of it? How do you avoid getting it?

[Eyak1971 in reply to RonZone]

It's been 4 years since I was on pd but when you hook up just like the manual option, there is a procedure in making sure there is no air in the line. Be sure to check with your nurse or Cycler manual. If the Cycler has a default or you attach at the wrong setting, air will get in the line. It will create a severe gas pain in the stomach before it either passes. Similar to what you might experience after surgery when the doctor uses air to expand the area that is being operated on. The gas will rise to your shoulders and ache severely depending on how much gas or air is used. Experienced that also. The latter takes a day or so to pass but the former passes in an hour or two. Again this is my own personal experience. Always check with your medical team.

[RonZone in reply to Eyak1971]

Ahh ok, I understand. Thanks for the extra explanation.

[RhenDutchess123 in reply to RonZone]

The only ways I can think to get air in the system is to have your transet set open while hooking up or not priming the lines first

[RonZone in reply to RhenDutchess123]

Gotcha

[LavenderRabbit]

I have a question, just out of curiosity. I have never done PD, but I thought about it. How much liquid do you put in? Does your stomach get big?

[WillaCather in reply to LavenderRabbit]

Because this was kind of a trial run, I put 4,000 ml in which is about two cycles. I think the normal amount that I will need will be double that. However, my stomach did not get big at all. Once I got to the dwelling stage, which is the part in which the solution just sits in your peritoneal, I was able to unplug and go about my business. In this case, it's sat for about an hour and a half which means that was an hour and a half that I could do some work at home.

[LavenderRabbit in reply to WillaCather]

thank you for sharing.

[RonZone in reply to WillaCather]

Hey, so you didn't put 4000ml in all at once, right, was it like 2000ml each "fill" for the trial run?

[WillaCather in reply to RonZone]

No, you're right. It was 2/2000 ml bags.

[RonZone in reply to WillaCather]

Gotcha, thanks

[LeslieK in reply to LavenderRabbit]

when the pd fluid is dwelling and also pulling off fluid from swelling by the end of the cycle I felt like my stomach would explode. It was the 1800ml fill plus fluid being removed so I would pull off @2300ml. That felt like a lot of liquid in my stomach. I was bloated feeling and looking. Felt like I drank a 12 pack of pop in an hour or something. I couldn’t wait to drain for the relief of the fullness. I also had shoulder pains from air after my last drain of the night.

[LavenderRabbit in reply to LeslieK]

wow! I never thought about the fluid that was coming out of your tissues building up in your abdomen as well.

[SadMad in reply to LeslieK]

The shoulder air pains suck. I keep a heating pad beside me just in case I get one.

[Jennypenny89]

Congratulations! Pd is not bad at all compared to hemo. I don't understand why people make it so much more than it is. Your right though, keeping it clean and sterile is the main worry. I did pd for one time 3 years and the next 6 years. Had maybe 4 infections all those years. My advice I also when you feel any kind of tenderness above your catheter to go in the clinic immediately. They can get a culture of your fluid and see if an infection is growing. Don't wait on those! ..good luck 🫶

[RonZone in reply to Jennypenny89]

Wow, 3 years then 6 years. You're an experienced warrior! That's great to hear that it lasts that long. How did you tell the difference between an infection type tenderness and something like gas pains. I've had some bad gas pains before and "wondered" if I have given myself an infection.

[LBatl]

Congratulations!

[WillaCather in reply to LBatl]

Thanks so much!

[RonZone]

Hey, thanks a bunch for your post! I"m seven months in and so far so good. Welcome to the PD club!

[Roswitha55]

Not being able to get another transplant, I opted for PPD. Started training in February for 3 weeks and I’m now on my own with a cycler. There is no other way . Hook up at night, go to sleep, 9 hours later disconnect and go about your day. I also did my first travel with the cycler. It’s no big deal and I’m looking forward to do many more trips.

[Hidden]

Well done! I had been on manual PD for nine months then my transplant in 2016. What I liked about it was that I felt like I was in control of my care.

[rabbit01]

Hello, I am pleased to hear it is going well. I have been on manual PD for coming up four years. Just moving on to the cycler. It's going quite well and it's odd getting my days back. The only thing to be prepared for is the amount of dialysis fluid that you need to store at home. It's double what I needed for manuals. So start thinking about where you can put it at home.

[RhenDutchess123]

Yaay....I am glad I chose PD

[Beachgirl32]

glad pd is working for you ❤️

[RonZone]

How you doing this week?

[WillaCather]

So I'm doing the cycler for the first time tonight. I just brought her home yesterday. I named her Frida Kahlo because despite being in terrible pain for most of her adult life, Frida still managed to create beautiful works of art. It's a little corny, I know. I'm nervous about the first time around but the cycler is very helpful in terms of its instructions. Up till now I was doing manuals. I'm looking forward to this new adventure!